I cried a lot last night as I took that pill. It was hard to swallow, because I couldn’t stop crying, because I couldn’t swallow my worries, my fears, my pride. Taking it meant a lot more than healing. It meant possibly not healing too, even making things worse.
That’s the funny thing about medication. It works differently for different people and it seems like doctors just prescribe them like candy. I think most doctors mean well and I know they have beaucoup years of medical school and experience, but these 1 hour waiting and 5 minutes actual constellations with them cant possibly tell them whats wrong with me or what the right medication is for my body.
Yes, there is a chance this medication can help reduce my spasms, which could reduce the whole “I can’t breathe” episodes, that have left my boyfriend restless sleeping at night with worry and my kids worried I might die. Maybe I’m in denial or a positive thinker but they breathing episodes don’t seem death threatening to me. Just a bit scary and uncomfortable.
There is also the chance that several of the nasty side affects from the medication could make it harder for me to work and those warnings about not taking while pregnant to stop taking if you think you might be pregnant….Does this mean I can’t have anymore children and that if my boyfriend is with me he will never have children?
My biggest worry is that I haven’t even been officially diagnosed with dystonia. I am still on the movement specialist waiting list. Still, I visited my regular PCP Thursday for a routine blood pressure follow up and it was there that my PCP saw the progression for my symptoms. The nurse called me in and began to check my blood pressure when my left arm began to feel that itch-burn-numb like feeling (that’s the best way I can describe it). It must have been the pressure or the squeeze from the blood pressure cuff. I am not sure, but the muscles in my arm, my stomach, leg and my back began to tighten and my arm and leg began to twist. Shortly there after I think I took of some other equipment and was very short of breath. I was in spasm mode. She took the cuff off and I caught my breath. Stepping on the scale to get my weight was even difficult. I walked with tremors. I joked about it what I can. It seems to ease people when they get nervous or worried around me. It makes me feel better anyways.
The rest of the visit wasn’t much better. I held on tight to the chair in the corner most of the visit. Not out of fear of falling, but because I grabbed on to try to stop some of the wiggle and I needed to rest a bit and then it was because I couldn’t let go. My left arm locked in the hold. My breath was short in and out of the visit too, so my answer to the doctor sounded like I was often out of breath. In there I cried because…frankly I was exhausted by then and I saw her writing notes, and prescribing meds, and concerened that I haven’t gone to the ER for any of my breathing episodes. She too worried that one of these days the episodes may not be over in 10-20 minutes like they usually are, as I told her they usually are. There I cried and I confided in her that I need to talk to someone, a counselor, a support group…anyone that was dealing with this stuff because I felt depressed and I just needed someone to talk to about it. She gave me some doctors names, told me to also ask my insurance and also offered anti-depressants. I turned down the anti-depressant meds but took her advice on the rest. Then she left and the nurse came back in and what was supposed to be a regular blood pressure check up suddenly became an oxygen test and one more EKG, except my body tightened and tremor so much the nurse couldn’t complete the EKG.
My PCP came back in shortly and again strongly recommend I try some medication for the spasms. She knew I was hesitant. She worried about the spasms that shortened my breath. I told her I worried about not being able to work at all because of the side effects of the medication. She told me it was up to me, but she would send the prescriptions to my pharmacy.
The next day I had another episode in the shower. The shower hitting my left side set me into spasms and again shortened my breath. This one really scared my boyfriend. He said one of these days I am going to drown and asked me to at least try the medication. He was really upset with me for wanting to wait to see the movement specialists before taking anything. I worried without proper diagnosis the wrong medication could make things worse. He insisted we had to do something to get the spasms under control because not breathing is worse. So that day I went back to the pharmacy to see if they finally filled the prescriptions correctly. The day before my PCP sent it to the wrong pharmacy so I and the pharmacist had to work on correcting it. We picked it up that afternoon but I didn’t take it that night. I hesitated. I worried. I cried. I fell asleep.
Sunday was my daughter’s birthday party. I had a few minor spasms here and there and a nasty headache, but my late afternoon everything was ready and everyone was here. When I finally sat down with everyone else to eat I began to wiggle and my left arm began to lock up and in. Afraid my daughters friends or any of the other kids would see it I got up and left to the other room, but still all of my siblings and mom noticed. My oldest sister who understands most about dystonia sat down by my left side. The last time she saw me and my spasms she gently touched my arm with her hand and it eased the locking, relaxing my muscles. It was amazing. She tried it again this Sunday except it didn’t work this time. Instead each time she touched my arm it set off tremors. I couldn’t stop wiggling and my other sister who hadn’t seen me tremor before looked at me funny. She asked me why I was shaking so much, thought I was playing a prank on her. We all had a good laugh, but then she stupidly told me how scary this all is. My brother tells her that was a stupid thing to say and then the rest of us start making jokes and talking, half discussing the dystonia and going off into tangents about $15,000 gold dildos and what famous people do with their money. I guess my shaking reminds us of vibrating sex toys. We are a weird bunch. Humor, our coping mechanism. Trust me I prefer the laughter so much more than the sadness I have been feeling as of late because of this. Still, they too insisted I try the medication.
So, that night after a great birthday party followed by a great night of sex with my boyfriend as I lay next to him in bed (a small spasm to follow) I start to cry again. Suddenly I began to think about the side effects and warnings and how I will never be able to have a kid for him, how if this gets worse what my ex may try to do custody wise, how I may not be able to follow my career…. I tried to hide the tears, but the feeling was overwhelming and he begged me to tell him why, so I did. Then he holds me tightly and tells me he just wants me to be okay. He tells me how scared he is and he’s afraid I will stop breathing and he just wants me to be ok. We talk a bit more and then I tell him I’ll try the medicine. He gets up and gets it for me, sits on the bed next to me and watches me struggle to take it. I swallow. Then he lies back down next to me, holding me tightly once more.